Friday, December 25, 2009

We are enjoying a very nice Christmas Holiday. The first week and a couple of days after the last chemo infusion weren't great. However for most of this week I have been feeling reasonably well during the days. I've been able to go work and feel fairly decent during the days. There is still some discomfort and pain that comes and goes and occasional body aches and mild nausea, but overall I can say I feel relatively well.

There has been some good news we have received in the meantime. The TIL (Tumor Infiltrating Lymphocytes) that were harvested during the surgery at our last visit to the MD Anderson Cancer Center are growing well. I believe we were told that they have grown to around 400 million cells and they are looking to have a couple of billion cells ready to infuse in February or March. We are excited about this news for a lot of reasons. We had a about a 50% chance of actually growing cell, and we won that coin toss, so we like that. It means the trip, the surgery, and recovery was worth it. And this now gives us another possible treatment in our quiver with some of the best odds of defeating the melanoma. This doesn’t mean for sure that we will use this treatment. If the chemo we are doing now is effective we won’t stop a working treatment to try something else just because the odds are better. But like I said we’re glad to have that arrow in our quiver.

Yesterday I got to do something that I thought I might not get to do at all this winter. I got to go skiing! And those who know me well, know how much I enjoy being on skis. First thing yesterday morning Curtis picked me up and we met with Lars and Brit and headed out for a backcountry tour into Silver Fork. It was cold and beautiful and cold, but well worth a few shivers to get out and enjoy the wonderful Wasatch mountains. We had a great run in the meadow chutes and headed back to the car. I was slow, and had some significant pain in the pelvis where the tumor remains, but I was very grateful to have the chance just to get out, and especially grateful to Lars, Curtis and Brit for the patience with my slow pace.

After we finished, I met with Allison, Sarah and Cameron who picked me up in the canyon and we headed up to Brighton where we met Uncle Andy, Grandpa Ted and Grandma Charlotte to spend the afternoon riding the lifts and skiing. Again it was cold, but the kids said they were warm and had a great time skiing with their grandparents and their rockstar skier uncle.

It meant a lot to me yesterday to be able to ski with the kids and to be able to get out into the backcountry. Here's to lots more days like that in the future.

Heading down the road for treatment, there's quite a bit going on in the next week or so. Monday (Dec 28) I have new CT scans that will tell us if the current chemo treatment is working. Following the scans I meet with Dr. Grossmann at HCI to discuss the results of the scans and to map out the next several weeks of treatment. And then on the following Monday (Jan. 4 - Happy Birthday Laura) I am going back into HCI for another chemo infusion. I won't know what happens after that until I meet with Dr. Grossmann this week.

We hope that everybody is enjoying the Christmas season. We have much to be grateful for not the least of which is the birth of The Child in Bethlehem. Merry Christmas and a Happy New Year to all.

Monday, November 23, 2009

I am writing this as I sit at HCI waiting for them to prep the drugs fom my next round of treatment. The surgical incisions from the surgery in Houston have healed up well and I'm starting my next round of treatment today. I'm sitting looking out the east side of HCI enjoying the view of the fresh snow that fell last night. It's great to have snow again in the valley and the mountains.

The next treatment is a Carboplatin/Paclitaxel chemotherapy. This regimen is considered moderate in its toxicity and the potential side-effects. The chemo is delivered via an IV (that they just put in) for a couple of hours as an outpatient procedure. The regimen is not terribly demanding. I have to come to HCI once every 21 days for the infusion. So I'll get an infusion today, and another one 21 days later, and then another one 21 days after that. Following the third infusion we will likely do new scans to see if the treatment is being effective or not. At that point we will reevaluate treatment. If this chemo is working, it is likely that we'll continue with this treatment, otherwise we may resort to the TIL in Houston.

We are looking forward to Thanksgiving and having a chance to be with family. We do have much to be grateful for. Not the least of which is great support and prayers extended to from great friends and family. We hope you all have a great Thanksgiving.

Wednesday, November 11, 2009

It has been a long day, but a successful surgery. Dr. Gershenwald removed two tumors, one about 4 cm deep and another, deeper, about 7 cm. Both look like good candidates for lymphocyte harvesting to create the TIL. We will know in about 4 weeks if the TIL growth is looking good and 8 weeks to know if it is successful and ready for possible use. The plan now is to recover in Houston until Saturday, fly home and start a new treatment in about 2 weeks

Friday, November 6, 2009

This week we had new CT scans. The CT scans are the litmus test for how effective the treatments have been. The CT scans take cross-sectional pictures every 5 millimeters throughout my torso. These images show the tumors in the lungs and in the groin. The Radiologists are then able to compare Wednesday's images with those of previous scans.

This time around we're seeing the tumors going in the wrong direction. The lung nodules have grown and the number has increased. The lymph node tumor to the right of my groin has grown from about 3 centimeters to almost 6 centimeters in the largest diameter. Obviously not the results we hoped we would see.

Step 1 from here Allison and I leave on Sunday for Houston for a week. I have a clinic visit with doctors there on Monday and then surgery to remove the tumor from my groin on Wednesday. From that tumor they will harvest lymphocytes, on the order of a couple thousand, I believe. The harvested lymphocytes will be grown/multiplied in the lab to a couple hundred thousand. These lymphocytes are important because they are preprogrammed to fight the cancer. They call them Tumor Infiltrating Lymphocytes or TIL. The growth/multiplication of the TIL takes about 7 weeks with about a 50% success rate in growing them in the lab. The reason for growing the TIL in the lab is to reinject me with them at a later date and send them through the body to attack the melanoma wherever it exists.

After the surgery comes Step 2 which is a little unclear. We will discuss what comes next with the doctors at MD Anderson and my doctor here at HCI and then determine what will be our best treatment. They tell me I'll need about 4 weeks to recover from the surgery before they consider any more treatment. That leaves at least 3 weeks before the TIL would be ready. So currently my doctor would like to start me on one of a couple different chemotherapy regimens. The regimen is undetermined at this time and these regimens would last 8 weeks. We would need to complete the chemo regimen before we could consider the reinjection of the the TIL. In fact at the end of the 8 weeks we would do new CT scans, and if those scans show that the chemo is effective we may not use the TIL. But since the TIL appears to be one of the most effective treatments, we want to 'bank' it in case the chemo is not effective. If that's the case at the end of the 8 week chemo regimen we will most likely turn to the TIL.

So as is par for this course, we don't know all the answers. But we are proceeding with what we feel gives us the best chance for success, and expecting zigs, zags, and forks down the road.

We're doing well, the kids are doing great and we have much to be thankful for, not the least of which is the great support and prayers of friends and family. We appreciate everything that has been done on our behalf and hope for the best in all your lives.

Sunday, October 18, 2009

Yesterday around noon I left the hospital. What a beautiful fall day on which to finally get a breath of fresh air. I got to spend a couple hours in a chair on the front lawn watching the boys play and enjoying great fall colors around the neighborhood. A nice reprieve from a week in the hospital.

We were told by Dr. Grossmann going into last week that the side effects from the IL2 would set in quicker the second time around. And true to his word, I started feeling rather poorly from the first dose. Thanks to a great medical staff and their attention, I received the first 8 doses on schedule (one dose every eight hours). After dose eight, the nurses and the doctor felt it best to wait for a bit. We ended up skipping two scheduled doses and then Thursday afternoon receiving my ninth dose, which would be my last. This dose packed the most punch. A couple of close friends that happened to stop by for a visit that night got to see me at my worst, but also helped immensely by being there. Thanks to a good nights sleep (thanks to an ambien sleeping pill), by Friday morning I was feeling much better. Friday was a day for monitored recovery and then I was released to go home on Saturday.

Now we wait for a bit. We won't know what the next treatment step will be until after I have CT scans done the first week of November. These scans will show us whether or not the treatment is being successful, i.e. tumor is reducing in size. If the IL2 is working, then it is likely we are in for a couple more rounds of the same. If it isn't we'll consider other options.

Special thanks to go out to all those who took care of the kids so that Allison could spend time at the hospital. And continual thank to everyone's thoughts, expressions, and prayers of support, they mean more than we can ever say.

Tuesday, October 13, 2009

I am back up at HCI for another round of high dose IL2. I checked in Sunday night so they could start me on antibiotics and fluids. Then Monday morning around 9:00 AM they hit me with my first dose of IL2. Since then we've received 3 more doses (1 dose every 8 hours) and I'm due for 5th dose in a couple of hours from now.

The drug side effects have kicked in sooner with this second round compared to the first round. Because of that it is anticipated that I will not receive as many doses as the first round and they will probably spread them out to try to better combat the side effects.

We appreciate the many people that are helping out in many ways, especially those watching the children so Allison can spend a good part of the day here with me.

It was great to have two weeks off prior to coming back up here. I got to be home for Cameron's birthday party.

The plan going forward is to do scans near the end of week 7. Based on the results of those scans we'll determine whether we continue with the IL2 treatment or consider some other alternatives.

Saturday, September 26, 2009

I am very glad to be home. I received very good care at HCI, but honestly I was very happy to leave to come home. I'll still deal with some of the side-effects for a couple more days. I should be back to feeling normal mid-week next week.

My heartfelt thanks goes out to all who helped with the kids, and to those who's thoughts and prayers were extended on our behalf.

Thursday, September 24, 2009

We are approaching the end of week 1. Since treatment started Monday, I have received 10 doses. I talked with the doctor this morning and he thinks we'll do one more dose this afternoon, then another dose early tomorrow morning for a total of 12 doses. I'm hoping to be out of here sometime Friday afternoon, but wouldn't be surprised to stay here til Saturday.

Overall the drug has had some side effects. I have retained a lot of water. Gained in water weight so far around 15 lbs. Most of which appears to be in my face which is very puffy at the moment. I've also got some fluid in the lungs that has given me a bit of a cough. They tell me when I leave that they will give me medication to help drop the water back off. My appetite has been decent up until last night when I had about three bites of dinner, and breakfast this morning was two small cups of cranberry juice. So food has lost its appeal

No big surprise, but the schedule has been modified slightly. Instead of having one week off between cycles they are now going to give me two. So I will now spend Weeks 2 and 3 at home and check back in at HCI for week 4. That will also be the case for the second course, I will still start on Week 8 but will have two weeks off and will check back in for Week 11. As always this schedule is subject to change at any time.

Sunday, September 20, 2009

So I have officially checked into Huntsman Cancer Institute (HCI) for treatment. Allison came up with me tonight and we arrived a little after 6 pm. Allison helped to get me situated and got the orientation and then went home to put the kids down for the night. I am very grateful to be able to receive treatment here in SLC so that Allison can still be with the kids.

Here in the near future I will be getting an IV for fluids and antibiotics tonight before the treatment starts tomorrow morning. I will likely spend most of the week here in the hospital for the administration of the treatment of the high dose IL2. We have been told that I'll likely be discharged Friday or Saturday of this week, depending on how things go. This then becomes Week 1.

Week 2 will be spent home again recovering and doing whatever I feel well enough to do.

Week 3 will be another round of high dose IL2 at HCI - checking in again on Sunday night and then hopefully out Friday or Saturday of that week.

I will then get a couple of weeks off. The current game plan (although experience tells me it is likely to change multiple times between now and then) is to do new scans at the end of Week 7. Depending on the results of those scans we will determine what the next step will be. For now we think it will be another course of two cycles of high dose IL2 starting with Week 8 at HCI, Week 9 at home, and Week 10 at HCI. Beyond that, what comes next is anybody's guess.

We are excited to be starting treatments after a bit of a roller coaster getting us to this point. We're grateful to be finally taking steps in the right direction.

We are extremely grateful to the many that have reached out in kindness to our family. And thanks to the thoughts and prayers from everybody we will make it through this.

Wednesday, September 9, 2009

I am starting to think that the most difficult part of this whole thing is getting everything scheduled. I'm sure I'll feel differently once the treatment has started in earnest. But for now, we have had some challenges and frustrations in getting to the start line.

We have been bouncing phone calls and emails back and forth between Huntsman Cancer Institute (HCI) and MD Anderson Cancer Center (MDACC) for a couple of days now in an attempt to determine when we can finally get this going. And although I've learned in the last couple of days, this is subject to change at a moment's notice, it appears that we have a plan in place.

We are planning on checking into the ICU at HCI on Sunday September 20th where I will receive the high dose IL2. I will be there for most of the week, likely being released on Friday or Saturday. This will become week 1. Week 2 will be off and at home. Week 3 will be back into the ICU at HCI for another round of IL2. After that we'll reevaluate and determine how to proceed.

Thanks again to all of your great support, your thoughts and prayers are very appreciated. We know many of you have challenges you're facing right now and our thoughts and prayers go out to you.

Saturday, September 5, 2009

Sooner or later this roller coaster is going to stop, but as of right now we don't know where or when.

We are trying to get in to receive the high dose IL2 drug treatment. This treatment requires that I spend a week in the ICU to receive the dosages. Both MD Anderson (MDACC) and Huntsman Cancer (HCI) can provide the treatment, but there are some variables we are trying to determine before resolve where and when we start the treatment. Right now we are trying to find out if we can start the treatment at MDACC possibly Wednesday the 9th of September or HCI on the 13th of September. We won't know if we can get into MDACC until Tuesday when everybody returns from the Labor Day weekend. And even the HCI 13th date has some maybes that we won't be able to resolve until later next week. So based on our track record this will change three more times between now and when we actually start treatment, but I think we are slowly closing in.

Monday, August 31, 2009

We had new scans done today that showed growth in the nodules in the lungs. Therefore they want to postpone the surgery to remove the lymph node so as to not delay treatment to try and combat the lung nodules. If we had the surgery done now, it would be two or three weeks before they could start me on a drug treatment while the wound healed and I recovered. So the current game plan (subject to change at a moment's notice) is to start me on a drug treatment to combat the lung nodules and do the surgery if needed at a later date.

We will hash out some more of the details out tomorrow with the physician and hopefully have a better defined approach then. But for now, although we are zeroing in on it, the final strategy is still a bit fuzzy.

Tuesday, August 18, 2009

To start off I would just like to send a thank you to everyone. We are continually amazed at how kind, generous and thoughtful people have been. We don't feel deserving of it, but it is very appreciated.

I have now had a discussion with Dr. Patel in Houston after the department team meeting. He has given us some options to consider. I have discussed those options with my family, Dr. Liz Hammond and Dr. Dave Gardner (great family friends that have helped me through this from day one), and my doctor here, Dr. Noyes.

Based on the recommendations from Houston and the above discussions, we've decided to go back to Houston for further treatment. There are still a few loose ends regarding the exact treatment that we're trying to tie up in the next couple of days, but nonetheless we're headed back to Houston. On Monday 8.31.09 I will meet with Dr. Patel and a surgeon to begin to formulate a game plan. There are a couple of questions that we won't have answered until shortly thereafter. Mainly they want to know if the tumor in my lymph node or the nodules in my lungs are growing. They will determine that by performing new CT and MRI scans directly after my visit with Dr. Patel and the surgeon. If they are not growing, they will go in and remove the cancerous lymph node and then monitor the lungs in the future to watch for future growth. At this point, we may or may not start a drug treatment called IL2. We'll have to wait and see.

The other option if the tumors are growing gets a little more complicated. They will want to harvest some tissue from the lymph node tumor. From this harvested tissue they can then separate the lymphocytes from the tissue. These lymphocytes are part of the immune system that fights off the cancer. They take the lymphocytes from the harvested tissue and grow them in the lab from thousands to something exponentially bigger (billions if I remember correctly). I'll come back later to what these are used for. The question will be if the tumor is growing, do they want to start me on a regimen of IL2 first before harvesting the tissue, or just go ahead and take the tissue. And that will be a game time decision made between us, Dr. Patel and the surgeon.

So why do they harvest and grow the lymphocytes? These lymphocytes become TIL (Tumor Infiltrating Lymphocytes). So in tandem with the IL2 drug treatment they start me on chemo to kill off all my other lymphocytes (lymphodepletion). This makes room for the TIL to come in. At some point they inject me with the TIL and it goes to work killing off the tumors. It doesn't work every time, but has shown some promising results.

From scenario one (remove lymph node monitor lungs) the lymphocytes will be harvested from the tissue and the TIL grown for possible future use if the nodules in the lungs grow.

Wednesday, August 12, 2009

I have now had the chance to sit down with the doctor at MD Anderson. It was an encouraging visit. We discussed my history and my current condition and then he went over a number of possible treatments that he might recommend. All of which have their pros and cons, but many appear to offer promising results. I won't bore you with the details of the various options.

At this point he is going to discuss my case with the rest of the melanoma department on Monday in their team meeting and get back to us by the middle of next week with what they would recommend. Depending on the treatment there is the possibility of administering at least some of the treatment in SLC which is encouraging.

When we know more next week we'll run another update.

I can't say enough thanks to everyone for the support and kindness that has been extended to our family. It is very appreciated!

Friday, August 7, 2009

I have an appointment in Houston with the Melanoma Medical Oncology Department at the MD Anderson Cancer Center on Wednesday the 12th. My dad has offered to go with me to be another set of ears as we visit with the physicians there.

Thursday, August 6, 2009

It kind of feels like every time I think we are going to zig, we zag. Right now we have changed plans a little bit. The original plan was to take part in the study with the doctor I have been seeing since my original surgery in '05. He is an excellent surgical oncologist, however it's not surgery that I need right now. It has been strongly recommended to me to see a medical oncologist that specializes in the treatment of melanoma. Since there are no melanoma specialists in Utah, I am trying to get in to see Dr. Patrick Hwu at the MD Anderson Cancer Center in Houston. I will get a consult there and try and determine what the best possible treatment for my situation will be. This will delay treatment temporarily, but in the long run we feel it's worthwhile to make sure we start in the right direction.

Right now I'm going through the process of getting an appointment there to see Dr. Hwu. It may take a couple of weeks to get in, so we're in holding pattern a bit longer before we know what we're doing and what the treatment will be.

I want to continue to thank everybody for the support that we've received and we know that with a lot of help we'll make it through this.

Thanks everyone for the encouragement and support we have received since I sent the last email. It was certainly not my intent to attract so much attention.

I talked to my doctor this afternoon and he has the results of the CT's and MRI I had last week. It turns out that the cancer has spread to my lungs. As per the doc there are several small nodules in the lung tissue. For the doctors in the house, hopefully that means something, for now I can't quantify how good or bad this is. My doctor would like to enroll me in a clinical trial of a new drug that uses your immune system to fight off the cancer. If I enroll in that study I will get randomly assigned one of two tracks. Track 1 being the drug treatment, Track 2 being chemotherapy. I will know tomorrow what the prescribed treatment will be. In the meantime I am trying to learn all I can about my options and what will be best for me and my situation.

I have some news that I wanted to pass on to everybody. I'm sorry to do it in an impersonal email, but I thought you would like to know.

Most of you know that in '05 I had a malignant melanoma (cancer), in the form of a mole, removed from my back. As part of that procedure they also removed some lymph nodes in my groin area. For the last month or so I have had a constant dull pain in the area the the lymph nodes were removed. At first I thought it was a pulled muscle. But after lingering for a couple of weeks and not getting any better, I thought it might have something to do with the lymph nodes. I went in to see my doc on Wednesday and he had an ultrasound done to look at the nodes. Turns out that one of them is about 3 cm in diameter. The doctor stuck me with a needle to get a tissue sample from the area and sent the sample off to the pathologist to look at. The pathology report came back positive for malignancy. So it appears my cancer is back.

"Where do I go from here?" is still a bit unknown. Next Thursday I have MRI and CT scans done to look for suspicious lesions elsewhere in my body. If those come back clean then the lymph node gets removed, and after that it sounds like there are a multitude of treatment options I may be in for. It sounds like chemo is a possibility. If the scans show something suspicious, then I don't know what happens yet. I'll get the results from the scans back next Friday.